Understanding the factors that influence stroke survivors to begin or resume exercise: a qualitative exploration

ABSTRACT

Background

Exercise after stroke has the potential to increase survivors’ physical function and decrease disability. However, despite health professional reporting they recommend exercise to stroke survivors, the majority are physically inactive. Stroke survivors have previously expressed a lack of adequate knowledge and skills to engage in exercise.

Objectives

The aim of this study was to understand why active stroke survivors chose to (re)engage in exercise and how they went about doing so. A secondary aim was to understand if health professionals had a role in facilitating exercise engagement.

Methods

Semi-structured interviews were conducted with stroke survivors who regularly engaged with exercise. Seven people aged between 60 and 71 years participated in the study. Time since stroke varied from 1 to 13 years. A reflexive thematic analysis approach was used to analyze interviews.

Results

Exercise was spoken about in a positive light. For some, exercise had always been important, for others it became important after their stroke. The themes of Changing Support Over Time, Old and New Identity and Proactively Impacting the Future were developed. The participants felt that health professionals often facilitated engagement in exercise, although the type of support that was most valued differed at different points in the post-stroke journey.

Conclusions

Authoritative support from health professionals and family members helped participants to engage in exercise in the early stages after stroke. Collaboration and being part of a team was appreciated for ongoing exercise engagement. Exercise provided hope as participants developed their identity after stroke.

KEYWORDS:

• Stroke
• exercise
• secondary prevention
• lifestyle
• reflexive thematic analysis

Introduction

Exercise entails body movement resulting in energy expenditure with the specific goal of improving or maintaining physical fitness.¹ Engaging in exercise has been shown to be key in maintaining health across the lifespan.² However, significant life events, such as a stroke, can make engaging in exercise more challenging as the stroke may impact the way the individual thinks, communicates and functions.³ Engagement or re-engagement in exercise is also challenging as over half of stroke survivors are left with a long-term disability, with 65% reporting this to be “severe.”³ In addition, nearly 40% of stroke survivors will have another stroke within 10 years.⁴ Therefore, it is perhaps unsurprising that stroke survivors are significantly less active and often have significantly lower fitness levels than similarly aged people who have not had a stroke.^5–8

Physical activity (i.e. any body movement resulting in energy expenditure)¹ and exercise (i.e. physical effort performed to improve or sustain health status) are vital after stroke as both can provide benefits over and above the multiple well-established benefits in the non-stroke population.^9,10 Physical activity after stroke can decrease disability and dependence and increase physical fitness, strength and ability to engage in daily living activities^9,11 whilst also benefiting mental health.⁹ Exercise after stroke has been found to be more effective at decreasing mortality than antiplatelets or anticoagulants¹² and can significantly decrease the risk of secondary stroke.¹⁰

The UK national stroke guidelines recommend stroke survivors participate in at least 150 minutes of moderate to vigorous physical activity per week in sessions of at least 10 minutes.¹³ It is recommended by The National Institute for Health and Care Excellence (NICE) and the Royal College of Physicians that health professionals advise people to engage in physical activity and provide lifestyle information after stroke.^13,14 Most neurological physiotherapists (77%) report they advise stroke survivors to engage in aerobic exercise¹⁵ but it is unclear how specific this advice is in terms of timings, dosage and frequency. Crucially, it is also not clear if any exercise advice given actually impacts upon exercise behavior. Also of importance is that despite health professionals reporting that they give exercise advice after stroke, most stroke survivors report not getting lifestyle or exercise advice.¹⁶ Stroke survivors do not feel they have the information or tools to adopt a healthy lifestyle, despite wanting to do so.^16–21 Stroke survivors report concerns that exercise may not be safe for them, substantiated by fact that they find lifestyle advice in the media and from health professionals can be confusing, occasionally conflicting and frequently changing.^16,17,19 Therefore, it appears that despite exercise after stroke being recommended and stroke survivors wanting to have a healthy lifestyle, they may receive a lack of support and confusing advice about how to engage in exercise.

One way of examining how and why stroke survivors return to, or begin, exercise is through learning from the experiences of those individuals who have been able to take part in regular, long-term exercise after stroke. Perhaps surprisingly, there is a dearth of research in this regard. Considering the experiences of stroke survivors who have been able to begin or maintain regular exercise will help to identify what facilitated that engagement. As such, the aim in this study was to gain a better understanding of how and why chronic stroke survivors chose to engage or reengage in exercise. This aim was guided by the following research questions: 1) What factors influenced chronic stroke survivors’ decisions to engage or reengage in exercise? and 2) What role did healthcare professionals play in influencing stroke survivors’ decision to reengage in exercise?

Materials and methods

Our understanding of participants’ lives after stroke was grounded in a critical realist ontological and social constructivist epistemological stance. We acknowledged that the understanding we developed of how individuals began or resumed exercise after a stroke would be constructed within historically and culturally situated social processes within ourselves.²² We also recognized our interpretive role in the development of the knowledge shared here through the research findings.²³ Therefore, the remainder of the paper is written in first person in order to provide a transparent view into the lenses which informed the interpretation of participants’ experiences. We have also included our details alongside that of the participants in Table 1 so that readers can fully appreciate our role and potential impact on the data interpretation. Our reporting of this work conforms to the relevant and philosophically aligned COREQ Guidelines.²⁴

Table 1. Demographics of those in the research.

Role	Gender	Age (years)	Background	Pseudonym
Participant	Male	68	Three years since stroke. In hospital for three months.	John
Participant	Male	65	One year since stroke. In hospital for seven weeks.	Sunil
Participant	Male	65	13 years since stroke. In hospital for six months.	Mark
Participant	Female	60	Three years since stroke. In hospital for six weeks.	Emily
Participant	Male	70	Three and a half years since stroke. In hospital for three months.	Petr
Participant	Female	61	Six years since stroke. In hospital for seven months.	Jane
Participant	Male	71	One year since stroke. In hospital for 10 days.	Clive
Researcher	Female		Neurological physiotherapist with extensive experience of stroke rehabilitation across inpatient and outpatient settings. Conducting this research as part of an advanced physiotherapy masters project.	Author 1
Researcher	Male		Sport and exercise psychology researcher with much experience of qualitative research.	Author 2
Researcher	Male		Clinical exercise physiologist with experience of running programmes offering physiological and psychological support for people after stroke.	Author 3
Researcher	Female		Lecturer and neurological physiotherapist with extensive clinical and research experience working with people after stroke.	Author 4

Participants

After ethical approval was received, participants were recruited via the charity LEGS (Local Exercise Groups for Stroke and Neuro Conditions). LEGS members were emailed by LEGS staff about the project and given an introductory letter. Those who were interested in participating in the project got in touch with the project lead via e-mail. A date and time for interview were arranged over e-mail. The interviewer and participant met for the first time online for the interview. The interviewer gave a brief background to the study before commencing the interview. The seven individuals who were interviewed were at least six months post stroke and regularly engaged with exercise classes, at least once per week, with LEGS. Support from the NHS has typically ended by this six-month point²⁵ and we felt that participants would be settled in to their post-stroke routine. Other inclusion criteria was that participants were at least 18 years old and able to communicate easily in English. One additional person contacted to take part but had not had a stroke so was not eligible.

Data collection

The interview design largely followed the framework of Kallio et al.,²⁶ starting with a chronology and closed questions before in-depth content was explored.²⁷ In-depth content included discussion about what the participants understood about the link between lifestyle activities and health and how they got started with exercise after their stroke. Physiotherapists from the recruiting charity provided feedback on the interview guide. Questions were piloted with a healthy female (age 60–65) and a male one-month post-stroke. The complete interview guide is in the supplementary material available online.

Interviews took place online using Microsoft Teams (M = 45 minutes, Range = 30–60 minutes). All interviews were recorded, and additional notes jotted down during the interviews. All participants were interviewed by myself (Author 1). Throughout each interview, responses were clarified using iterative or probing questions and repeating summaries. Four participants interviewed alone, while three had input from their spouse to help them remember their story, typically the acute stage of the stroke. Data from the spouses were included in the transcripts and also analyzed. Additional data emailed to me unprompted by two participants was also included in the analysis.

Data analysis

Interviews were transcribed verbatim immediately afterward and analyzed using a reflexive thematic analysis approach.²⁸ This involved immersion into the participants’ stories during the interviews, transcription, reading and re-reading. Following immersion, I began to develop points of interest in the transcripts. I noticed the positive attitude of most of the participants early on in my analysis, as participants spoke about how they were “lucky” and planning for the future, so I purposefully explored how this positive attitude had developed. I asked a critical friend, (Author 4), to review to transcripts and my initial codes. Following our discussion, lines of enquiry and corresponding sections of the transcripts were copied into an Excel sheet to facilitate a visual examination of commonalities across participants’ stories. Transcripts were coded, with codes then copied into the Excel file in a continuous manner alongside data collection. Following the first four interviews, initial lines of enquiry related to participants’ positive attitudes were developed and then purposefully explored in subsequent interviews. The non-linear process allowed for thoughts to remain malleable and develop as interpretations dynamically developed in relation to stories shared by participants. Following all interviews and subsequent analysis, themes were defined, named, and shaped into a results sections that linked back to our research aims. The results section provides a rich description of our analysis with quotes included to show connection back to participants’ stories. Our interpretation of the data is included in the discussion; however, readers are invited to consider their own interpretations.

Results

Participants’ stories highlighted reasons for engaging in exercise during recovery from a stroke. Participants’ generally had a positive outlook on exercise, either due to positive experiences prior to their stroke or in their introduction to exercise post-stroke. Health professionals were viewed as instrumental to facilitating engagement in exercise opportunities. Changing Support Over Time, Old and New Identity and Proactively Impacting the Future were three themes present throughout the participants’ stories. A thematic map is provided in the supplementary material helping to show how themes were developed and providing further quotes from participants.

Changing support over time

Participants who exercised prior to their stroke naturally reengaged afterward too. For others, support and guidance helped them to discover exercise. Regardless of whether they had been active prior to their stroke, participants felt that they benefitted from support to start exercise. Many participants felt authoritative support from either health professionals or family members was helpful:

I had a wonderful NHS physio that took me there. As soon as she knew there was a gym there, she said, “right, we’re going” and I didn’t really want to go. Because it’s also a bit humiliating, if you can’t even stand up properly or, you know, anyway, she made me. And I’m glad she did. So she was very, very good. Emily, 60

Emily described how someone else taking charge initially empowered her as it showed her that she could exercise. The physiotherapist took her out of her comfort zone, something she would probably not have done independently. In contrast, for long term participation participants appreciated working in collaboration with healthcare professionals.

What I liked about it was the facilitators joined in and set their own targets and goals, this meant they didn’t set themselves apart/above from the patients. John, 68

As participants became more comfortable with exercise the dynamic between the health professionals and the participants changed. Participants viewed themselves as more of a team with the professionals rather than needing to be helped by them. At this point, exercise participation was established in participants’ routines. The support of the group also helped this ongoing participation:

It’s not that I see somebody doing something and therefore I have to do the same thing but better the other person. What I do is, somebody else is doing something and you say to yourself “well, hang on, that’s, that’s a different way of doing it and that’s quite useful”. Petr, 70

Different people benefitted from group support in different ways. Support was provided by the exercise group leaders and fostered between group participants. Some participants relished healthy competition but others, as described by Petr above, found others gave inspiration and ideas. Sociability was also enhanced by participants fostering roles within the exercise group. For example, participants described being “the gregarious one” or “the caring one.” This links in to the importance of identity after stroke, described in more detail below.

Old and new identity

Participants’ identities were important in starting exercise. Most participants described their personality types and how it was important to them that they could still demonstrate these important aspects of their identity:

Yeah, I’ve always been in to sport, played football for 40 years. Played squash, played golf. So, I’ve always been used to training of some sort. Clive, 71

Most of the participants had always exercised, it seemed natural for them to want to continue and to maintain that aspect of their pre-stroke identity. All of the participants spoke passionately about their stroke not defining them. Taking an active role in their rehabilitation played a part in regaining part of their identity.

Identity was also key when participants spoke about their ongoing involvement in exercise. Some participants had previously been in prestigious senior occupations but could no longer work. It seemed exercise was able to help them reframe their identity.

And they [health professionals] are interested only in getting me up to a level where I could ask for food, for lunch and dinner. Come on, that’s not, not what I want really … Basically, you [health professionals] have a level at which you say “right, you achieved that.” And that’s it. What you want is a higher level for various people it is. You should think that. Petr, 70

I was going “I need to do more. I need to do more” and they were saying “well hold on a minute. You know, don’t overdo it.” And so there were discussions I was having with them and so they were saying things like, you know, at the time I wasn’t, I wasn’t supposed to cycle, so they were saying “walk,” so I would, uh, to go for my swim in [local outdoor lake], which is obviously cold. I would walk there, which would take me an hour and 10 minutes. Sunil, 65

Sunil and Petr had both lost their work identity in which they had been in positions of power and worked toward for the majority of their lives. Exercise was a way for them to retain their identity as high achievers, doing over and above the “norm” or expectations even though the stroke had taken away their professional identity.

Proactively impacting the future

Intrinsically linked to the theme of old and new identity was a spirit of hope for the future and hope for change. Participants had goals and exercise was a way to proactively work toward these goals and a different future. Goals were often linked to their desire to regain a sense of who they were or continue the development of their new identity:

Yes, I love to travel when we used to be able to travel … And so [husband] makes me walk across the sand to the sea, and then go into the sea and get knocked down by waves. But it’s that get better at doing that kind of thing, and going to a restaurant and being able to walk into the restaurant, and move sideways into a chair. Jane, 61

I didn’t think it was over yet. I didn’t want it to be over yet. I did want to be able to, to have some semblance of life like I had before. Emily, 60

For most participants exercise was a tool in helping them improve their lives for the future. Exercise helped Jane and Emily proactively work toward the many things they wanted to achieve and the identity they wanted to have.

One participant spoke about the identity he did not want to have and how he did not want to be seen by others. Exercise offered him a chance to avoid always being “disabled.”

I suppose there are probably people that are quite happy to sit there for the rest of their lives in wheelchairs and get three meals a day and get money from the government … But I’m not.

The initial doctor said “you’ll never use your arm again” … which sort of depressed me a little, to know my wife had married a cripple [sic]. Mark, 65

This participant contrasted starkly with the others as he seemed to have a negative self-image. He spoke about what he did not want to be, whereas other participants spoke of who they wanted to be in the future. Mark had not been able to start exercise early after his stroke and felt that healthcare professionals did not have hope for him to improve. However, Mark had maintained enough self-belief and motivation that things could be different in the future and exercise helped him to work toward this vision.

Discussion

We explored the experiences of stroke survivors who have been able to maintain regular long-term exercise since their stroke. Themes of Changing Support Over Time, Old and New Identity and Proactively Impacting the Future were explored. Our principal novel finding was that healthcare professionals were often felt to be instrumental in facilitating exercise after stroke but this was not through telling participants what to do. Instead, the participants spoke about how health professionals had an important role in empowering them and demonstrating how they could get involved in exercise. This gave them hope for their futures.

In line with previous research, we found that giving people instructions to be active is not consistently effective at helping them to be active.²⁹ The present participants did not recall explicit advice given by healthcare professionals, but they did readily describe those who had helped them to start exercise by providing opportunities or by empowering them. Morris et al.,³⁰ exploring the views of stroke survivors, their carers and physiotherapists found that self-efficacy was important to physical activity participation. Interestingly, they also found that physiotherapists often did not see motivating people to exercise as part of their role. The present research demonstrates the important role that healthcare professionals can have in helping people to exercise. Participants’ identities and personality types were also key to their exercise participation. A loss of identity has been reported after stroke.³¹ Some of the participants in the present study had lost important aspects of their identity since their stroke and exercise helped to provide a regained sense of self. This is supported by Morris et al.³⁰ who also found that physical activity could help to foster a positive identity after stroke. This appears to link to the finding that many participants also used exercise as a tool for hope for the future.

A potential limitation of the current study was that participants showed greater health literacy than has been found in other work on lifestyle post-stroke,^{16,19–21,32} potentially making them more likely to engage in physical activity.³³ There are a number of potential reasons for this contrast to other research, firstly, we cannot know whether the involvement in exercise increased health literacy or vice versa. In addition, disadvantaged socioeconomic populations have lower health literacy than others.³⁴ Participants in the current study spoke of holidays and illustrious careers so may be socioeconomically advantaged. A further limitation acknowledged is that the majority of the data analysis was carried out by one author. Frequent reflection and discussion amongst the team was imbedded within the process to help authors consider a variety of data interpretations. However, we recognize that our own perceptions and beliefs, particularly that of the lead author, may have impacted upon the interviews and subsequent data interpretation. It is not possible for us researchers to have no impact on participants and data interpretation.

The current study has highlighted where future research would be beneficial. It would be useful to investigate the impact of healthcare professionals actively adopting some of the strategies for engaging in exercise, such as taking stroke survivors to the gym and exercise classes, that participants found helpful. It would be interesting to know if these approaches are helpful to the wider population of stroke survivors.

Implications for clinical practice

Participants in the current study demonstrated that they could be empowered by healthcare professionals to take part in exercise after their stroke, and this was often particularly beneficial when it happened very soon after discharge from hospital. Indeed, the one participant who did not start exercise on hospital discharge and felt a lack of hope from health professionals showed a negative self-image in stark contrast to the other participants. Health professionals can also consider the importance of allowing people to maintain hope for change after a stroke. The concept of “hope” and “false hope” has received much attention recently.^35–37 Whilst we would always advocate honesty in the professional-patient relationship, the current participants all demonstrated that hope for a different future was a positive driver to exercise and did not stop them from enjoying their current lives and abilities.

Conclusions

We aimed to explore what factors influenced stroke survivors’ decisions to exercise and what role healthcare professionals had in this. Health professionals we able to educate and empower people after stroke. The findings have implications for clinical practice, particularly the importance of helping people to be active early after stroke and allowing them to have hope that they can influence their future.

Availability of data and materials

The datasets generated and analyzed during the current study are available in the University of Portsmouth repository [https://doi.org/10.17029/c0b79a19–1363-42cb-a33e-6a818be2eff4].

Consent for publication

All of the participants consented to the publication of their anonymized data.

Ethical approval and consent to participate

Ethical approval for the study was obtained by the University College London Ethics Committee. Reference number 19,763/001. All participants provided written informed consent to participate. Verbal consent was also given prior to commencing each interview.

Acknowledgments

The authors would like to thank the charity LEGS for their support with the project, as well as the participants for the time and insight they gave.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/10749357.2024.2304970

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.